Other Resources & Links

Please send us e-mail if you discover a site that we should include on our Links Page or if you find that one of our listed links has expired.



Domestic Links

Able Project
Provides a network where people with disabilities and their loved ones can effortlessly research, compare, locate and obtain mobility and assistive products.

Baby Center Information
A complete on line resource for new and expectant parents.

Birth Defect Web Site
Provides parents and expectant parents with information about birth defects and support services for their children.

Centers for Disease Control Birth Defect Prevention
CDC serves as the national focus for developing and applying disease prevention and control, environmental health, and health promotion and education activities designed to improve the health of the people of the United States.

Children With Spina Bifida
A resource page for parents.

Disability Network
An information highway for the disabled and their families. You will find support from others as well as helpful and entertaining links for Adults and Children.

Easter Seals
Easter Seals’ mission has always been to provide services for people with disabilities and their families in their local communities.

Families and Advocates - Partnerships for Education
Families and Advocates Partnership for Education (FAPE) aims to improve the educational outcomes for children with disabilities. It links families to information about IDEA.

Family Friendly Fun and Special Needs
Family Friendly Fun offers family fun and family health resources to enhance the quality of family life for families with disabilities and special needs.

Family Voices
Family Voices is a national, grassroots clearinghouse for information and education concerning the health care of children with special health needs.

Genetic Alliance
Genetic Alliance increases the capacity of genetic advocacy groups to achieve their missions and leverages the voices of millions of individuals and families living with genetic conditions.

GiveForward
GiveForward gives people personal fundraising pages to raise money for loved one's medical expenses.  We've helped thousands of people raise millions of dollars for things like chemotherapy, organ transplants, travel, and living expenses while undergoing treatment. 

Healthcare 411
Healthcare 411 is a news series produced by the Agency for Healthcare Research and Quality (AHRQ)

Health Insurance Info
The Georgetown University Health Policy Institute has written a consumer guide for getting and keeping health insurance for each state and the District of Columbia. These Consumer Guides are available at this web site and are updated periodically.

The Hydrocephalus Association
Hydrocephalus Association provides support, education and advocacy for individuals, families and professionals. The association tries to help families and individuals dealing with the complex issues of hydrocephalus.

Institute on Community Integration
Institute on Community Integration tries to improve the community services and social supports available to individuals with developmental disabilities and other disabilities throughout the United States.

Kids' Camps
KidsCamps.com is the Internet's most comprehensive summer camp resource guide and online camp directory of day camps, overnight camps, special needs camps, sport camps, special interest camps, art camps, music camps, family camps, camps for rent/lease, and more!

Latex Allergy Association
American Latex Allergy Association has designed this website to help connect you with educational materials, support groups, publications and product information to assist you with your understanding of natural rubber latex allergy.

Latex Allergy Links
Latex Allergy Links is a comprehensive, up-to-date listing of latex allergy-related sites on the Internet.

March of Dimes Birth Defects Foundation
The mission of the March of Dimes is to improve the health of babies by preventing birth defects and infant mortality. We carry out this mission through research, community services, education and advocacy to save babies' lives.

Maternal/Child Health Coalition
The Coalition works to strengthen the capacity of individuals and organizations to enhance maternal and child health in the greater Kansas City area.

Micronutrient Initiative (MI)
The Micronutrient Initiative (MI) is a not-for-profit organization specializing in addressing micronutrient malnutrition.

MO Developmental Disabilities Resource Center
MO Developmental Disabilities Resource center Serves all Missourian’s free of charge as the main source for information on disability and related topics, and provides connections to community supports.

National Birth Defects Prevention Network
The National Birth Defects Prevention Network (NBDPN) is a group of individuals involved in birth defects surveillance, research, and prevention.

National Center for Learning Disabilities, Inc.
NCLD provides essential information to parents, professionals and individuals with learning disabilities, promotes research and programs to foster effective learning, and advocates for policies to protect and strengthen educational rights and opportunities.

National Center on Physical Activity and DisabilityHere's the descriptor text: The mission of the National Center on Physical Activity and Disability (NCPAD) is to promote substantial health benefits that can be gained from participating in regular physical activity.

The National Council On Folic Acid
The National Council on Folic Acid (NCFA) is a partnership of over 80 national organizations and associations, state folic acid councils and government agencies whose mission is to improve health by promoting the benefits and consumption of folic acid.

National Institute of Neurological Disorders and Stroke
The NINDS conducts and supports research on brain and nervous system disorders. NINDS is one of the more than two dozen research institutes and centers that comprise the National Institutes of Health (NIH).

National Organization for Rare Disorders, Inc.
NORD is dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.

National Veterans Legal Services Program (NVLSP)
The National Veterans Legal Services Program veterans service organization assist veterans and their advocates through education, advocacy, litigation, training advocates who represent veterans, and publications.

Pain and Spina Bifida
Pain Issues for Persons with Spina Bifida is a place for anyone who is affected by spina bifida whether its a child or adult with spina bifida, a parent of a child with spina or family & friends of someone who has spina bifida and is experiencing pain problems.

Partnership for Prescription Assistance
Brings together America’s pharmaceutical companies, doctors, other health care providers, patient advocacy organizations and community groups to help qualifying patients who lack prescription coverage get the medicines they need through the public or private program that’s right for them. Many will get them free or nearly free.

Parent Advocacy Coalition for Educational Rights
The mission of PACER Center is to expand opportunities and enhance the quality of life of children and young adults with disabilities and their families, based on the concept of parents helping parents.

Parents with Disabilities Online
Provides information, support and resources to parents with disabilities since 1996. It's the Internet's One-Stop Resource for Parents with Disabilities.

The SB Center Message Boards
SB Center and message board.

Spina Bifida Central
Spina Bifida Central is a place to find support and share experiences.

Spina Bifida from the National Information Center for Children and Youth with Disabilities (NICHCY)
Definitions from the National Information Center for Children and Youth with Disabilities.

The Spinal Cord Information Network
The UAB conducts research to improve upon and maintain a cost-effective comprehensive service delivery system from the moment of injury across the lifespan of persons who sustain spinal cord injury.

World Congress and Exposition on Disabilities
The world's leading disability event, is committed to improving the lives of those with disabilities, their families and caregivers, physicians, allied healthcare professionals, educators and adapted physical education specialists and everyone working within the disability community.



School & Camp Links



German Links

German Association for Spina Bifida & Hydrocephalus
German Spina Bifida Association.



Italian Links

Che cos' la spina bifida La spina bifida o mielomeningocele una malformazione del sistema nervoso dovuta alla mancata chiusura del tubon.
Italian Association.

CHI SIAMO APISB una associazione regionale nata per iniziativa di un gruppo di genitori di bambini affetti da spina bifida (mielomeningoce).
Information in Italian about Spina bifida.

Ecco alcuni indirizzi internet collegati alla spina bifida FAISBI (Federazione delle Associazioni Italiane Spina Bifida e Idrocefalo) Develo.
Italian Spina Bifida Federation.



International Links

Association for Spina Bifida and Hydrocephalus ASBAH
A national organisation providing information and advice about spina bifida and hydrocephalus to individuals, families and carers.

Disability Net
Information, products and services for people with disabilities.

IFHSB - International Foundation of Hydrocephalus and Spina Bifida
The International Federation for Spina Bifida and Hydrocephalus (IF) is the world-wide umbrella organisation (NGO) for Spina Bifida and Hydrocephalus created in 1979 by national organisations of people with these impairments and their parents.

Indian Spina Bifida Association
Indian Spina Bifida Association

Spina Bifida and Hydrocephalus Association of Northern Alberta
Northen Alberta Spina Bifida Association.

Spina Bifida & Hydrocephalus Association of Ontario (SBHAO)
Folic Acid Canada
Ontario Spina Bifida Association.

Spina Bifida & Hydrocephalus Association of Quebec
Quebec Spina Bifida Association.

Spina Bifida: de "open rug" Spina Bifida of open rug is een ingewikkeld probleem, waarbij het niet alleen gaat om een sluitingsdef.
Netherland Spina Bifida Information.

Swiss Federation of Spina Bifida and Hydrocephalus
Swedish Spina Bifida Association.

Spina Bifida & Hydrocephalus Canada
Canadian Spina Bifida Association.

Please Note: These resources and information are reviewed periodically. They do not represent all of the resources currently available on a topic. If any updates are needed or if you would like to recommend a resource, please email the Resource Center at sbaa@sbaa.org.